Halaven - Day 1
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I’m stopping by to say hi to all on Halaven...I’ll be starting on Thursday, and tonight I’m getting anxious. But from what I have read I just might get some mileage out of it.
I’m coming up on my 1 year since diagnosis and we haven’t found anything that has worked more than 3 cycles. I have several liver mets and they’re growing fast...I’m in extreme pain this past week and am really hoping Halaven can even possibly shrink some to get a little relief. I hope and pray.
Thank you Shetland for guiding me here
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Kayla, I'm glad you found us and hope we may be of help as you start this new regimen. I find the treatment not too bad. Biggest issues for me are lack of appetite and low energy. I'm guessing you're on a 2 week on, 1 week off cycle. The 2nd infusion usually hits a little harder than the first, but then you get a week off to recover.
Some folks have issues with the pre-meds. In my case, I only get Zofran to prevent any nausea, but others have had steroids. Work with your team to get the best combo.
Lastly, I just saw on another thread a woman who doesn't post here but has been on Halaven for a year with great results. I'm hoping that for you and all of us here. Sending up prayers that this is just the right treatment for you now and with quick resolution to you pain.
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Hi - I started on Halaven on August 20 and was scheduled for the 2nd infusion on 8/27, but when they did the blood work my white cells were extremely low, so they put it off for another week. Still low, so they gave me Zarxio shots and I finally got an infusion on 9/10, and Zarxio treatment that I do at home. I am scheduled for round 2 tomorrow, then a week off. It has not been an easy treatment for me. I am tired and shaky, no appetite and a lot of inertia. Oh well, if it works I can deal with it, and hopefully acclimate to it. My hair had just gotten to about 1/4” after A/C treatment, so I will be interested to see if it falls out. MO said it might not fall out, but probably wouldn’t grow much either. We will see!
Good luck everyone!
Donna
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thank you Jaylea and Donnabelle, I recognize both of your names from my lurking on various threads over the year...
I too will be on 2 weeks on 1 off...starting at a little lower dose than usual, as they say I'm heavily pretreated. I have read that side effects can be drastically reduced because of that, I'm hoping not as trade off for effectiveness.
I have been on dexamethasone for a couple of weeks to combat possible inflammation as a cause of the pain, if I remember correctly that is also used as a premed, I'd rather be off of it tho, I'm starting to look fluffy. The change in appearance is also why I'm concerned about hair loss. I've looked very healthy since diagnosis but now? Now? The looks will come.
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Hi Kayla! Hi Donnabelle!
Donnabelle, I bet most of your 'symptoms' are due to your low blood counts. The filgrastim you're getting might help a lot.
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Hi Pajim
I hope you are right. I did give myself three shots at home after treatment last week. I go in tomorrow for second treatment of round two. Because I never got the second treatment during round 1, I don’t know how the SEs will be, but I think I can assume that my numbers will be high enough to get the treatment.
Hope you are doing well!
Donna
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Guess I never should make assumptions. Turns out the three shots of Zarxio did not come even close to increasing my ANC, so no round two of cycle two for me today. I was sent home and told to take an injection today and another tomorrow. I will return on Thursday and hope to get the treatment then. It will be a reduced dose.
In the meantime, my ALP is rising and rising and has been since March. MO says that all the chemo is starting to effect some functions in my body. I only hope that we can get this treatment on track, and that it helps contain things for as long as possible. I’ve got stuff to do
Donna
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That's not good news Donnabelle. I have had trouble with ANC recovery with all the txs we've tried; frustrating for sure but also disconcerting. With all the delays it makes me wonder how effective.
I truly hope you get tx on Thursday. Yes, we have important stuff to do!!!
I am laid up in the recliner today...the pain is so intense I don't know what to do with myself...I too hope Halaven gets this back under control. Thoughts and prayers to all.
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Sorry to hear about your pain Kayla. Is it the liver tumors pressing on things? Are you taking anything for it? I have so far escaped from a lot of pain, knock on wood. I had some this past spring but the AC reduced the tumors enough to resolve that. I can definitely feel my larger tumors by just touching under my rib cage. But they are not really causing pain right now, even though the last CT showed that they were growing again.
Come on Halaven, help us out!
Donna
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Donna, that's too bad. It happened to me too, so don't just think it's you. I asked for the shots because I had a nasty schedule and a whole bunch of sick people around me. My ANC a week later was lower than normal. But still above the mendoza line.
Kayla, I'm really sorry about the pain. Does anything help?
I too have been lucky to have no pain up until now so I have zero advice on how to make it better. If this is normal for you you should get a palliative care consult. It's their job to treat symptoms like this.
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thank you for your understanding, Donnabelle. Yup, several liver, diameter of biggest ones are 7cm 3cm and 3cm and several other foci. It is my understanding that there is one at the dome pressing up on the diaphragm and this latest growth maybe including a capsule stretch...but they are just saying “we suspect". I have to admit I am very looked after in terms of pain meds. I've had a couple of pain bouts, usually after day 1 of the first cycle of new chemo and have had pain relief very shortly after lasting a couple of months each time, so I know there's hope... we just need this to kick in.
Yes, come on!!!!!
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just saw your post pajiim, thank you. I am finding a position o the recliner that is helping and of course the meds are helping...but I fear using too much too soon because they are opioids and also taking dexamethasone for possible inflammatory response.
I have my bloodwork and dr appointment tomorrow morning and will ask about palliative consult.
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Welcome, Donnabelle. Gosh, you and Kayla have had a rough start to Halaven. I pray things settle down as your body adjusts to the new meds.
I had CT and bone scans yesterday. These are my first since starting this tx, so I'll finally get to see if it's working. I meet with my MO later today to get results. If they're good, we discussed taking a holiday to help with my neuropathy. If they're not, it's on to the next. I'm trying (not always succeeding) to be zen about it either way.
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Jaylea, I would love to hear how your scans turn out. It'll be a great relief if it's working. I must say it is very brave to take a break, but hopefully it's so successful you get that option. Is the neuropathy residual from another tx? Or has Halaven brought that on? My first dose is tomorrow morning, so my troubles haven't been from Halaven, it's most likely Navelbine failing and a progression, it will be so. nice tohear how it is working for you
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Jaylea I agree with Kayla. Please let us know how the scans work out! I am hoping for the BEST news for you! By the way, you look like a movie star with those sunglasses 🕶 on!
Donna
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LOL, Donna, I look nothing like that carefree gal now. Bald and gaunt. I did get my eyebrows tattooed which helps not to look too scary first thing in the morning.
MO reports that everything is stable, with even a little improvement in my spine mets. She did say there are a few things they're keeping an eye on, like a 6mm spot in the liver that right now looks like scar tissue. As she explained it, the longer we're on treatment, the more things pop up and look wonky on the scans. She's giving me an extra week off that will hopefully help me gain some weight and stave off the neuropathy. But as to a full-on holiday (whatever that means), she said now isn't the time. I think those wonky things on my scans are just enough for her to be conservative. Nonetheless, I'm taking this all as good news. Once I progressed on Ibrance, I burned through Taxol/Gemzar pretty quickly, so am glad that Halaven is stemming the tide right now.
Kayla, I started having neuropathy issues on Taxol, and was doing pretty well the first few cycles of Halaven, no worsening. I religiously ice my hands and feet at each tx. There was one where the nurse was rushed and I didn't get a full 20 minutes of icing prior to tx, and that's when I noticed things went south. Maybe it was coincidence, but since then I tell the infusion nurse up front that I need at least 20 minutes before the Halaven push. Good luck tomorrow and let us know how it goes.
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Hello, Halaven friends. I’m just checking in. I had my third infusion. A few days after the first infusion I was thrown in jail, oops, I mean hospitalized, for having a fever. That delayed the next infusion so we basically started over and called my second infusion the first of cycle 1. A week later I got another infusion, so I am now on week two of my first real 3-week cycle. I’m getting 4mg zofran before my infusion. And I am still on Xeloda. I have a scan in a few days to check on the bile duct stent. I wonder if we will see tumor shrinkage. I know it’s really just luck, but I’m calling myself a badass for having a Halaven infusion in the afternoon and going to dance class in the evening. I’m looking in the mirror thinking, these people have no idea what I did today. Boy am I tired now.
Donnabelle and Kayla, I’m glad you found your way here. The ladies here have been very helpful to me as a Halaven newbie.
Jaylea, thanks for mentioning the hand and foot icing. You encourage me to keep up with it. I think you may be onto something when you connect not icing long enough with symptoms showing up. When I had taxol, my first hand neuropathy showed up after the infusion where I unthinkingly put my hands under the warm blanket.
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Jaylea, that sounds pretty good!
I'm on chemo holiday at the moment. Had chemo on the 11th but now I have three weeks off. if I could only kick this cold I'd be a happy camper. Well except for the fact that I still can't walk.
I recommend it to everyone. Unless the cancer comes out to get you. Pretty sure that when I get back we'll be switching treatments, but who knows? More scans in my future.
Kayla, I hope your pain get better!
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Jaylea, it sounds like you might get some good time on Halaven...bonus will be if you can get the neuropathy to stay at bay. I hope you improve more on the extra week off and your appetite returns.
Shetland, and on Xeloda? wow...keep us posted on that combo, there must be a whole lot of side effects to manage. You have a stent, that must have been a scary incident, you’ve been thru the ringer already. Won’t that be great to see shrinkage....that I hope for us all.
Pajiim, i fear getting a cold on these chemos. I’ll try to read back why you might be changing but if you’d like to give me a quick update I appreciate that...I see you started Halaven in January...I hope you had more better times than hard. I enquired about a palliative pain team and sure enough we have access to one and I’m definitely taking advantage.
Well Halaven team...may we all have a restful night
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The short version is that my TMs are rising. [after dropping like a stone last winter] Scans are 'stable' except the area around my thigh. Which they have now radiated. That might help keep me on Halaven, we'll see.
Meantime I'm on a three-week-off vacation from Halaven. My MO is worried that I'm looking tired. I don't feel really tired but when he said it my husband nodded his head vigorously. So the guys win on this one. LOL. Not that I have any objections.
At a conference today and tomorrow. Me and my crutches are headed to Spain next week. So much for resting up. But I expect to have a really good time, and I'll be able to taste the wine. . .
Scans and rehab when I get back.
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Oh Pajim I wish I could sit down with a whole bottle of wine and “taste” my way through it, or alternatively, put a long straw in it and suck the whole sucker down. Damn liver mets. But I will be living vicariously through you! Enjoy!
Jay Lea, stable is such a beautiful word. Congrats!
Shetland you are quite the warrior being on Xeloda as well as Halaven. I had mucho SEs on Xeloda so I hope it is giving you an easier time.
Kayla hope the pain is getting better!
Well, my ANC went up enough for me to have treatment today which is why I am posting at 1am (steroids). Not sure how the number went from .4 to 3.4 in two days but I’ll take it. So I have completed cycle 2. Next week off and we are flying to Pittsburgh to visit our daughter next Thursday. Not Spain, lol, but Pittsburgh is a beautiful city!
Going to try to get some sleep now. Hugs to all.
Donna
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Donna, I'm infinitely fascinated at the different pre-med protocols. I had steroids when I was on Taxol, but not Gemzar or Halaven. Others here have started off with steroids but negotiated their way out of them at some point. I never minded them, made me feel sort of normal for a moment. Of course the crash is no picnic.
What a wonderful way to spend your week off - visiting your daughter. I hope it's a great trip.
Pajim, we'll be living vicariously through you as you travel to Spain and want to hear all about it when you return.
Shetland, you're a warrior going to dance class after Halaven!
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Lol, Pajim. I know well The Look that one’s onc and DH exchange when they are ganging up on you. May your trip to Spain lift your spirits! And lower your TMs.
Kayla, how did your infusion go? Jaylea, I forgot to say congratulations on stable! Donnabelle, I agree Pittsburgh is a beautiful city. I went there for an ILC conference and did some sightseeing.
I have been on Xeloda for two years and getting along pretty well, but with adding Halaven, it’s a whole new game. Even though I went to dance class on infusion day, two days later I am good for nothing. I’m not keeping up with even the basics at home. That recent fever happened two days after an infusion. Hospital, IV antibiotics, no clear sign of infection, sent home. Now guess what. Two days after the next infusion — fever. This time I am watching it and am not planning to call or go in unless it gets high or I feel really ill. I know. But It is too exhausting and disruptive to do the hospital thing.
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Shetland - very interesting about the fever? I don’t know other signs of infection off hand, but if you have even a little other sign, the hospital will be pleased to have your business. I have read that the the liver mets themselves may cause a fever, maybe they’re retaliating? Up here the ER has a clear protocol to follow when to release a chemo patient with a fever...but I must admit ive done the same, just waited it out.
I had my tx yesterday morning, I feel quite alright today. They up’d my dexamethasone and I think that is helping the pain as well as giving me the energy I need to prep-house for lunch guests tomorrow. I have noticed today tho’, Jaylea, I have sensations in my fingers and thumbs, I’ll keep an eye on that. We’ll see what tomorrow will bring.
I, too, will have to live vicariously thru you all next week. I’ll look forward to the wonderful stories and experiences you’ll share.
I’m glad I found you all, to lead me thru this chemo drug, my nurse yesterday says she's only had 2 other woman on Halaven in about 7 years but truth be told, I live in a smaller town.
Best wisges
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Shetland, oh wow. I bow down to you, surviving on both drugs. The fever is likely due to drug-drug interaction, son't you think? I'd be doing exactly what you are -- waiting it out or ignoring it. If it's just the 'thing that happens'. . . steroids might help.
So sorry you had to spend time in the hospital. That's been one of my New Years resolutions each year and so far (knock on wood) I've been lucky.
Yeah, everyone seems to have their pre-meds. I could go down to zero if I wanted. No dex. They'll offer Zofran and I can say no to that as well. But I sorta like my small amount of dex. Keeps me going for a couple of days.
Donnabelle, have fun in Pittsburgh. I've only been there a couple of times but I agree it's a nice town.
Kayla, I hope the pain stays away!
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Hmm i didn't think of a drug-drug interaction. I do find it iinterestingthat two days after each infusion I get a fever. My blood counts have not been terribly low. You mention steroids. When I had an allergic reaction to a sulfa antibiotic years ago, the reaction included fever.
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Today I came for an MRI and then went over to the urgent care. Fever was 99.8 - 100.5 today. I got a dose of IV antibiotic and had labs. Refused the other rigamarole. I wanted the doc to give me some other kind of antibiotic to add to augmentin that I could take at home. But when i refused cipro he was done with me. I feel there is no individualization happening here. Now the fever has gone back to 101.5. I can't decide whether to check in. I don't know if I really need to get IV antibiotics and monitoring, or if this is just CYA.
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Shetland - I hope things have worked out for you by now. I’m not sure why these fevers are popping up but I have to assume your body is fighting something....maybe the treatment combo or a reaction to them. I’d hate to say it but maybe the best idea Is to follow their procedures just to get the answer as to why you’re body a reacting this way. Oh you must be frustrated to be treated as a subject and not an individual, someone needs to adjust their bedside manner. Good luck to you tonight and i hope tomorrow brings you answers and relief
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Thank you, Kayla. When the fever got to 101.9 I went back and checked myself in. I have accepted that the triage/urgent care and the hospital have their protocols they must follow, and that I can’t expect the kind of brainstorming I do with my onc from them. But everyone has been kind. As it is the weekend, I will wait to talk to my onc.
How did it go with your lunch guests, Kayla? I can’t imagine preparing for lunch guests, but then I’m not on Dexa! Donnabelle and pajim, looking forward to hearing of your travels. Jaylea, keep on icing and I hope you all take some time to enjoy the beginning of autumn. I think the autumnal equinox is Monday?
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oh Shetland- I am so glad you did this. Please take care of yourself, or should I say, let them take good care of you. I am glad they are being kind
Why do things always happen on weekends, when the doctors we need are off? I am extremely curious as to what's going on, please keep us posted. I hope your MO is on top of it first thing Monday and the answers arequick and easy and tx is not affected in anyway. Peace to you this Sunday.
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